[Note: Study suggests many patients once labeled ‘recovered’ from CFS are merely less disabled, underscoring the need for effective treatments, and for studies applying newly implicated biological markers / diagnostic criteria.]
Objective: This study sought to examine long-term health, symptom, and disability outcomes among patients with chronic fatigue syndrome (CFS) by comparing those diagnosed with CFS 25 years ago with healthy controls.
Method: Of the 25 participants diagnosed with CFS 25 years ago, 5 self-reported that they maintained a diagnosis of CFS, while 20 reported no longer having a diagnosis. These two groups were compared with healthy controls on outcomes related to functioning and symptom severity.
This study sought to gain a better understanding of functioning among patients with CFS who have been ill for about 25 years.* Across all outcomes other than the Mental Health subscale of the MOS SF-36, the persist group demonstrated more impairment than the control group.
This finding highlights the sweeping debilitating nature of CFS across a number of domains such as physical and emotional difficulties, specific symptoms, pain, and sleep quality.
Moreover, it appears that individuals who maintain a diagnosis of CFS for more than two decades continue to report a high level of disability, as participants in this study scored at least one standard deviation below general population means across all MOS SF-36 subscales except for Mental Health (Jenkinson, Coulter, & Wright, 1993).
Perhaps the most important findings in this study pertain to the remit group, which accounted for 80% of the 25 CFS participants. Given the duration of the follow-up, it would be expected that the remit group would demonstrate comparable functioning to a group of healthy individuals.
Yet this group had significantly more impairment than controls on 21 of the 23 outcomes evaluated.
Thus, while people who no longer meet full criteria for CFS would be considered recovered by some standards, these individuals likely do not attain their premorbid level of functioning.
Another important finding with regard to the remit group is that on 17 of the 23 outcomes tested, their scores were not significantly different from those of the persist group, suggesting that the remit group maintained a similarly high level of disability.
Those who remitted from CFS showed significantly more impairment on 21 out of 23 outcomes compared with controls.
On 17 outcomes, those who remitted had nonsignificant differences in impairment compared to those who maintained a CFS diagnosis.
Findings from this study suggest that over time many individuals will not maintain a CFS diagnosis but will not return to their premorbid level of functioning.
Those individuals who considered themselves as no longer impaired by CFS were more disabled and symptomatic than controls who had never been diagnosed with CFS.
Despite no longer maintaining the diagnosis of CFS, this group failed to return to normal levels of functionality at baseline.
Future longitudinal research is needed to examine long-term CFS outcomes in larger representative samples, utilizing a more recent case definition.
In subsequent follow-up studies, the inclusion of biological markers implicated in this illness would augment previous self-report studies.
Findings from this study underscore the chronicity of adolescent CFS and the need for effective medical treatments.
Source: Journal of Clinical Psychology, June 29, 2012. DOI: 10.1002/jclp.21880, by Brown MM, Bell DS, Jason LA, Christos C, Bell DE. DePaul University, Chicago, Illinois; State University of New York at Buffalo. [Email: firstname.lastname@example.org]
* See also: a video of Dr. David Bell's Apr 16, 2011 presentation on this research at a meeting of the Massachusetts CFIDS/ME & FM Association - "25-Year Follow-up in Chronic Fatigue Syndrome: Rising Incapacity" - as well as a written summary of the presentaton by Joan Livingston.